The Gift of Light

“I’m Aviva, Chief Visionary Officer of Aviva Productions,” she warbles in front of a microphone specially adjusted to fit her diminutive size. An adorable, slightly hoarse laugh. “Which is kinda funny, since I can barely see at all!”

It’s just the next wonderful step for 12-year-old Aviva Krainess, who navigates life through illness and chronic pain with a constant smile on her face.

She was the baby of the family – a petite, shy six-year-old when her family made the big move from Cleveland to Israel in the summer of 2006. Three months later, when mom Leah saw that Aviva had developed some sores on her feet, she consulted with a dermatologist. Kids being kids, she expected to walk out with nothing more than a prescription for some cream. Instead, the doctor ordered intensive blood work, followed by a second, and then a third round of tests.

“The dermatologist knew the problem right away as soon as she saw Aviva,” Leah tells me, “But she didn’t want to tell us until she had confirmed it beyond the shadow of a doubt.”

At seven years old, Aviva had just suffered her first stroke.

The diagnosis came back: lupus, a chronic autoimmune disorder in which the body attacks its own tissues. The roller coaster had just begun. A top pediatric rheumatologist confirmed the diagnosis by noting the arthritis in Aviva’s fingers and the butterfly-like markings that had begun to spread across her face in the sun. She prescribed a low-dose drug used to treat lupus and sent the Krainesses home. But a couple of months later, when Aviva began to vomit and experience severe back pain, her parents rushed her to the emergency room when suddenly she was unable to move her body. At seven years old, Aviva had just suffered her first stroke.

But an MRI showed no operative condition in the brain, rather the doctors suspected Central Nervous System Vasculitis, a condition where veins in the brain swell, causing the person to be more susceptible to blood clots. The lupus was making itself known in her brain in the form of vasculitis, and now the medications began in earnest. Major doses of steroids, then rounds of chemo, but still Aviva was having strokes. Prayers for Aviva Malka bas Leah pierced the heavens around the world, as her strength waned and the paralysis took hold.

“And then the medical clowns came!” Aviva chirps up from her perch at the head of the dining room table, as though we’ve just been retelling the rollicking adventures of a recent birthday party.

“No,” Leah laughs. “Then you went to Alyn.”

With Spirits Intact

Alyn Family Hospital, the only hospital of its kind in Israel, is one of the world’s leading facilities in pediatric rehabilitation. Thankfully, Aviva arrived at Alyn very soon after her strokes had hit, giving her the best chance at recovering mobility.

Eventually, Aviva was doing outpatient rehab work – hydrotherapy, animal therapy, learning how to walk and talk again. “They would tie the parrot’s birdseed a few rungs up just a little out of Aviva’s reach to motivate her to strain upwards, while they put weights on her left leg, which needed strengthening. They made her crawl in to feed the snake, which was her favorite,” says Leah. After a strenuous few months, everyone dared to hope that Aviva could go back to school and resume life sort of like a regular ten-year-old. But God had other plans.

“We took a trip to the zoo and suddenly Aviva started throwing up every couple of feet. I called the hospital, asking if I should bring her in but they said, ‘Nah, it’s just a virus.’ It wasn’t letting up so I brought her down to Emerg but they told us to go back home. That next day she collapsed to the ground and was completely unresponsive, staring blankly into space. It was probably the scariest experience of my life.” It was an experience Leah will never forget – and which Aviva will probably never remember.

Aviva was quickly intubated and put into a medically-induced coma. Scans showed her brain was very swollen and there was little the doctors could do.

She had terribly graphic hallucinations, brought on by the medications. It was, of course, an incredibly stressful time for the Krainesses, but a few days later, Aviva opened her eyes again.

“Did I miss the coming of Moshiach [the Messiah]?” was the first thing she wanted to know. “Did my sisters get married?”

A veteran of extended hospital stays, Aviva was now hospitalized for months, alongside patients with serious medical problems. It was difficult, but Leah, who stayed at Aviva’s side nearly 24/7, and Aviva herself, were determined to make it through with spirits intact.

The doctors can’t get over how she’s been through so much and yet she’s so positive and happy.

“We would take it one day at a time,” Leah explains. “We helped each other through things. We’d say, ‘Oh! We got through another test! Have we had more tests than [our forefather] Avraham?!’ One night, I was sleeping on a futon and it was killing my back and I started complaining, and Aviva said, ‘Just like I have tests, you also have tests. This is also for the good.’ We build each other up. And we’d try to make other people laugh.”

“In the hospital, the clowns didn’t want to leave Aviva,” adds her father, Leib Chaim. “They all loved her. And all the doctors are so impressed with her. They can’t get over how she’s been through so much and yet she’s so positive and happy. Her primary doctor, Dr. Navon, said, ‘Anyone with your level of pain wouldn’t even be able to get out of bed in the morning. But you? You’re always smiling. How do you do it?’”

“I’d leave Aviva in the Art room at the hospital to run some errands,” Leah continues, “and she would start schmoozing with the patients and their mothers and have them all in stitches! Just the other day I was in the store and a woman said, ‘How’s Aviva? I really want to get in touch with her. She gave me so much inspiration!’ That’s Aviva.”

Vision

After the grueling hospital stay, Aviva returned to Alyn. But this time, her deficits were much more intense. She could barely speak. Her memory was deeply affected by the seizure-like episode she had suffered, and her gait was very limited. It was back to square one, but Aviva was hardly daunted.

Step by arduous step, Aviva regained her abilities to walk and talk, with an attitude so upbeat it had everyone around her shaking their heads in wonder. And when the next speed bump in her winding road hit, Aviva took it with the same equanimity with which she’d navigated the obstacle course until now. High pressure in her eyes due to the steroids she was taking for the Lupus led to the development of glaucoma, and Aviva lost sight completely, save for a “pinhole” view in one eye which a highly skilled surgeon, Dr. David Walton, at the Boston Children’s Hospital managed to salvage after multiple surgeries.

“When Aviva lost most of her vision, she said, very matter-of-factly, ‘That’s why Hashem gave me two eyes. So if I lose vision in one, I still have the other!’” Leib Chaim marvels.

She has worries, she confides, but despite her serious medical condition, most of what preoccupies Aviva is just the mainstream adolescent concerns: friends, grades, and the occasional bad hair day. Still, she tells me candidly, she wonders whether she’ll be able to get married.

“But my teacher [for the sight-impaired] told me that an equal number of seeing people and blind people get married!” she insists, before trotting off to bring me some amazing samples of her work from the ceramics class she’s been taking.

“Aviva never says, ‘I can’t do it.’ ‘I’m limited.’ She never finds excuses for her disease or her weaknesses or her lack of vision,” Leah muses proudly. “She used to be shy and introverted, but today she’s strong and she communicates her needs and if something is bothering her. In the morning, it would take her a few minutes to stand on her legs – that’s how bad her pain is at times, but she’d still go to school. She’d say, ‘I need to learn Torah!’”

Strength and Devotion

Much of Aviva’s resilience and strength comes from her parents, who have supported her and cheered her on with incredible devotion. “Sometimes, when my legs were hurting I would ask for a wheelchair,” Aviva says. “But then my mother would say, ‘If you get a wheelchair then you’ll never push yourself to walk again.” For longer distances, Aviva famously zips around town in her motorized scooter, usually with her mother behind the wheel.

Aviva’s illness and her unique ways of coping with it – far beyond her years – have touched people around the world. A family who read about Aviva some time ago requested to meet her on their recent trip to Israel, where the husband insisted on receiving Aviva’s blessing. An anonymous donor sent her a laptop computer and, more recently, an iPad, on which she shows me her own hand-drawn logo for her future enterprise. “In the beginning, I wanted to be a painter,” Aviva says confidently. She pauses, cocks her head, then lets fly a surprise revelation that makes her mother’s mouth drop open, kvelling. “But now I want to be a speaker, because I already give people a lot of chizuk [inspiration], so I want to spread it even more!”

Her smile is a constant companion, even at the hardest of times.

And does she ever! Aviva shares a Friday afternoon telephone date with the rabbi of her congregation, who regularly asks his young friend to bless him, and patiently answers the question she has frequently posed: “Why?”

“I think Aviva has come to accept what God has given her,” Leah says.

When Rabbi Benjamin Blech, a frequent contributor to Aish.com, became sick, Aviva wanted to contact him to hear his perspective on illness. Providentially, he came to Israel just a short time later and she met with him in person. She found his response to her question of “Why?” very satisfying. “People who get sick are God’s messengers,” Rabbi Blech told Aviva. “Our job is to show everyone how to handle life’s tests. Instead of complaining, we show the world how we have faith that God’s Plan is for the best. We’re role models.”

Aviva embodies this mission. Her smile is a constant companion, even at the hardest of times. In a couple of weeks, Aviva will be hosted by the National Institute of Health, in Bethesda, MD, where researchers are interested in her very rare case and she may be eligible for a new treatment, but the prospect of eight hours of testing a day doesn’t seem to faze her. How does she do it? I want to know.

Aviva offers this sage advice: “Sometimes thing are hard, so I get sad. And then I get up. Because it’s better to be happy than to be sad, because you can get through life a lot better when you’re happy. You can’t really pull yourself up if you’re sad.”

“It’s all in the mind!” she finishes off with a laugh referring to her latest endeavor – and her father’s brainchild – called Mind Theatre which catapulted Aviva into the role of Chief Visionary Officer and unveiled her pretty amazing acting talent. As Aviva’s blindness set in, Leib Chaim realized the unfortunate dearth of entertainment options for sight-impaired people – especially children. He harnessed Aviva’s unbounding inspiration and can-do spirit, to create an audio based production for children that’s like watching a Hollywood movie but the pictures are created solely in the listener’s own mind.. “Isn’t that COOL!” exclaims Aviva in the video she created for the crowdfunding page to get the project up and running with her first production, The Emperor’s Secret. Partnering with Mercava a non-profit that assists organizations and individuals in turning ambitious ideas into reality, with Aviva at the helm, the goal is to create a new genre of entertainment – Hollywood-quality acting, plots, and effects, using only audio – sans visuals.

“Darkness has given me the gift of light, real light,” Aviva says, in the video. “I can enter a world of endless imagination and see beyond limitations. And with this light, I just knew that despite my blindness...no, because of my blindness, I can enjoy stories in a whole different way. And I would like to share that with the whole world.”

She’s a little girl, making a big impact, and while Aviva’s story is far from over, one theme leaps off every page: It’s all about attitude, and she’s going to make hers sunny, and spread it around the planet.

About the Author

Riva (Henig) Pomerantz lives with her husband and five children in Ramat Beit Shemesh. Her stories and articles appear on aish.com, in Mishpacha Magazine, and in several other publications. Click here to order her latest book, Prisms, published by Menucha Press. You can visit Riva's website and read her blog at www.rivapomerantz.com.

The opinions expressed in the comment section are the personal views of the commenters. Comments are moderated, so please keep it civil.

Visitor Comments: 23

(19)
Elise Zakroff,
May 8, 2013 4:47 AM

We are very inspired by Aviva's story and we also have one to share.

Nechama Zakroff is a 17 year old and lives in Denver Colorado. She to suffers from Glaucoma along with other special needs due to being born with cataracts.. No matter what challenges are put before her she some how manages to stay positive and inspire others by using her sense of humor her willingness to still try doing things like swimming hiking and scary roller coasters to show others that life is good as long as by the end of the day her feet touch the ground. She also goes to 2 schools successfully for her education iand she was a camper at camp Sternberg for 7 years. This summer our special ed program Keshet of the Rockies will honor Nechama and I was wondering if there was some way to make a connection between our cause and Aviva's project that would be a win win for all as well as connecting our family with Aviva's since we have so much in common. Please let me know if this can be done and if Nechama's story can also get some national attention as well. I think Aviva's Project and Nechama's dreams for the future could compliment each other quite well. Thank You Mrs Elise Hamburger Zakroff

(18)
Reuven Frank,
May 5, 2013 10:34 AM

U R Gr-8!

I'm very sorry that this little girl has been "dealt this hand" by G-d.But, I'm very happy that she has given all of us the strength and Hizuk (not exactly the same as 'strength"), and a "piece of her heart" to move us to feel better about ourselves!Aviva, "Hang in there! G-d has BIG ideas and plans for you!"

Reuven Frank,
December 4, 2016 3:15 PM

Is this me? and Are you related...?

Reuven Frank is a fairly common name. At least, I hope so, because I don't think I wrote this.Anyway, what I wanted to know is as follows:"Krainess" is NOT such a common name. In the late '70s, there was a Rav Ze'ev Krainess in Ohr Somayach's new Kollel program.Are you related to him in any way?

I also think that Aviva is inspiring and that she has found her calling. Namely, being HaShem's messenger for the Positive in this world."Hang in There!", indeed.

(17)
chevi,
May 4, 2013 6:46 PM

Aviva, u are the most inspiring, incredible youung lady! It gave me such chizuk and food for thought to read about your amazing Emunah and positive attitude in life. May Hashem bless you with continuous good health and improvements. May you be blessed and continue inspiring others around the world! I will read this beautiful article to my students!

(16)
Baila Kivelevitz,
May 3, 2013 4:53 PM

Aviva! Thank you for your inspiration! Your strength of charector and ability to see optimism even in the face of adversity is rare.Your clarity on what is important in life is something we can all learn from. May you continue to change others lives as you live yours. Much Hatzlacha! :)

janice julius,
August 7, 2014 12:58 AM

ever since i've met you i'm your biggest fan .

please allow me too be one of your followers in any thing you do whether it has to do with music . or you performing somewhere.

(15)
Eise Zakroff-Denver Colorado,
May 3, 2013 1:29 PM

I can really relate as a parent with a visually impaired child

My Daughter Nechama was born with cataracts that grew over her eyes. She also struggles with glaucoma. She has gone through many surgeries and cornea transplants to restore vision, and on May 8th 2013 she will have a laser procedure to bring down pressure she to faces total blindness but her strength and positive out look inspires all who know her.Thank You for sharing Aviva's story and helping the world see the HUMBLE CHILDREN BEHIND THE BIG STICK like Aviva and our Daughter Nechama Rochel Zakroff. who are amazing role models every day!!

Leib Krainess,
May 4, 2013 8:12 PM

I'm Aviva's Father

Thank you for sharing a bit about your truly special daughter. May she continue to see Hashem's light and feel His love. May Hashem make her surgery successful beyond all expectations!

(14)
Naami,
May 3, 2013 5:01 AM

Such a beautiful neshama!

Aviva is an unbelievable inspiration to be positive and not take anything for granted. I hope that Mind Theater takes flight soon and that Aviva has a starring role! Can't wait to hear more great things from her.

(13)
Malka,
May 3, 2013 4:21 AM

I love you Aviva!!!! You just gave me so much chizuk!!!! I wish I knew you personally and that I could be close to you!!! You are an amazing person with a special neshama! Please pray for all of us that we will be able to have so much trust and live for Hashem and Torah!

(12)
Anonymous,
May 3, 2013 2:32 AM

speechless!

This article leaves me in awe! I don't know what to say! This girl is unbelievable! Without any exaggeration this girl is literally a gadol hador!

(11)
ruth housman,
May 2, 2013 9:11 PM

Viva, Aviva!

This is so inspiring. I was in tears reading what Aviva has been through and her indomitable spirit. It's a journey that brings light, to everyone around her. She is, Amazing. A true Messenger. I am truly moved by this amazing young girl. I wish her a future, filled with people who love her and recognize her gift.

(10)
Miriam Ahuva,
May 2, 2013 7:46 PM

You inspire courage

Aviva you give me the courage to face my trials with greater dignity and faith that Hashem wants me overcome my tests. How incredible that you are so very young. Bless you for the work you do .

(9)
Danitra,
May 2, 2013 7:33 PM

Wow

What an inspiration and absolute blessing Aviva is. I sit here in utter amazement at what the Almighty has done. Feeling a bit down just moments ago, I thought Lord, let me see Your light. No sooner did I finish that thought than I landed on the aish.com homepage to see "The Gift of Life" emblazoned w/her smiling face w/next to it. Thank you for being a living example to all of us. Because of a young blind girl thousands of miles away, I am seeing things more clearly. Aviva, you are beautiful inside and out; never let your light stop shining...your rays reach farther than you know!!! Although I'm not Jewish (Christian), I pray for your health, well being, and continued success. [(I hope that's okay:)] Be blessed!

(8)
Anonymous,
May 2, 2013 5:03 PM

Words fall short of expressing my admiration for you, Aviva. How special you are and how special your parents surely are to merit a child with your depth, courage, and middos. May HaShem bless you with many years of gezunt and brochas of revealed good, and that you give Yiddishe nacahs to your parents.

(7)
Sara Ben-Zakai,
May 2, 2013 3:39 PM

So much inspiration packed into such a a special person

You've got me praying for you also.Savta Sara

(6)
Jay,
May 1, 2013 5:44 PM

Amazing

She is amazing and reminds me of the book mentioned by Rav Orlowek "And then there was light", which tells the story of Jacques Lusseyrand.

(5)
Fay,
April 30, 2013 1:11 PM

Aviva, you are the most c ourageous young woman I have ever read about!

May Hashem give you much koach and gezunt and many, many healthy years to continue lighting up the world. It's people like you who will help bring Moshiach.Kol tuv!

(4)
Miriam,
April 30, 2013 11:07 AM

Wow, breathtakingly powerful!

This article is like nothing I've read in my life! What I find so incredible is that Aviva was not born like this, to a life of being "different" and so "had to" rise above, be so incredible. She remembers very well what life was like before! The greatness of this girl blows my mind! So many powerful lines in this article to write down and remember. From Aviva and that one from Rabbi Bleich. Wow. Thank you Aish. Aviva, you are the gadol hador in acceptance, in love of Hashem, in the mitzvah of simcha, in so many unbelievable middos. Wish I could meet you! I would love to know your Hebrew name to daven for you! (And I would love to give you my name to daven for me. Your prayers are certainly amazingly powerful.)

[If I might make one suggestion to the amazing author of this article: Line "But G-d had different plans" smacks of something I don't think she wants it to!]

Thank you for awesome article. I only wish Rav Noach could have read it!

Leib Chaim,
April 30, 2013 8:44 PM

I'm Aviva's father

Thanks for sharing your heartfelt and inpsiring comments.
Aviva's full name is Aviva Malka bas Leah.
Thanks for putting her in your tefillos!

(3)
Aaron,
April 29, 2013 12:46 PM

Thank you for this story

I sat next to Aviva and Leah on the flight from JFK to Baltimore and had a wonderful conversation. I never got their names but wondered who they were and hoped the best for the young girl who was traveling to the US for treatment. Small miracles do happen and now I know the story behind the small-talk we made on the short flight. I pray for another miracle. Refuah Shelayma, Aviva!

(2)
Janet,
April 28, 2013 9:59 PM

bracha

What a bracha and an inspiration Aviva is, along with her parents. May Hashem bring her a refuah shleimah and may they and their project bring much light to others. And may we learn from them to turn darkness into light and to see the power of a positive attitude. Thank you for sharing this!

(1)
goldy,
April 28, 2013 2:32 PM

giving us the gift of (in)sight

thank you for this amazing, inspiring article that allows us to "see" this beautiful Neshama and her extraordinary strength of character.

This year during Chanukah I will be on a wilderness survival trip, and it will be very difficult to properly celebrate the holiday. I certainty won't be able to bring along a Menorah.

So if I am going to celebrate only one day of Chanukah, which is the most significant?

The Aish Rabbi Replies:

If a person can only celebrate one day of Chanukah, he should celebrate the first day.

This is similar to a case where a person is in prison, and the authorities agree to permit him to go to synagogue one day. The law is that he should go at the first opportunity, and not wait for a more important day like the High Holidays.

The reason is because one should not allow the opportunity of a mitzvah to pass. Moreover, it is quite conceivable that circumstances will later change and allow for additional observance. Therefore, we do not let the first chance pass. (Sources: Code of Jewish Law OC 90, Mishnah Berurah 28.)

As an important aside, Chanukah candles must be lit in (or at the entrance to) a home rather than out of doors. Thus, you should not light in actual "wilderness," but only after you've pitched your tent for the night.

There may be another reason why the first night is the one to focus on. Chanukah is celebrated for eight days to commemorate the one-day supply of oil that miraculously burned for eight days. But if you think about it, since there was enough oil to burn naturally for one night, nothing miraculous happened on that first night! So why shouldn't Chanukah be just seven days?!

There are many wonderful answers given to this question, highlighting the special aspect of the first day. Here are a few:

1) True, the miracle of the oil did not begin until the second day, and lasted for only seven days. But the Sages designated the first day of Chanukah in commemoration of the miraculous military victory.

2) Having returned to the Temple and found it in shambles, the Jews had no logical reason to think they would find any pure oil. The fact that the Maccabees didn't give up hope, and then actually found any pure oil at all, is in itself a miracle.

3) The Sages chose Chanukah, a festival that revolves around oil's ability to burn, as the time to teach the fundamental truth that even so-called "natural" events take place only because God wants them to.

The Talmudic Sage Rabbi Chanina Ben Dosa expressed this truth in explaining a miracle that occurred in his own home. Once, his daughter realized that she had lit the Shabbos candles with vinegar instead of oil. Rabbi Chanina calmed her, saying, "Why are you concerned! The One Who commanded oil to burn, can also command vinegar to burn!" The Talmud goes on to say that those Shabbos lights burned bright for many hours (Taanit 25a).

To drive this truth home, the Sages decreed that Chanukah be observed for eight days: The last seven to commemorate the miracle of the Menorah, and the first to remind us that even the “normal” burning of oil is only in obedience to God's wish.

In closing, I'm not sure what's stopping you from celebrating more than one day? At a minimum, you can light one candle sometime during the evening, and that fulfills the mitzvah of Chanukah - no “official Menorah” necessary. With so much joy to be had, why limit yourself to one night only?!

In 165 BCE, the Maccabees defeated the Greek army and rededicated the Holy Temple in Jerusalem. Finding only one jar of pure oil, they lit the Menorah, which miraculously burned for eight days. Also on this day -- 1,100 years earlier -- Moses and the Jewish people completed construction of the Tabernacle, the portable sanctuary that accompanied them during 40 years of wandering in the desert. The Tabernacle was not dedicated, however, for another three months; tradition says that the day of Kislev 25 was then "compensated" centuries later -- when the miracle of Chanukah occurred and the Temple was rededicated. Today, Jews around the world light a Chanukah menorah, to commemorate the miracle of the oil, and its message that continues to illuminate our lives today.

A person who utilizes suffering to arouse himself in spiritual matters will find consolation. He will recognize that even though the suffering was difficult for him, it nevertheless helped him for eternity.

When you see yourself growing spiritually through your suffering, you will even be able to feel joy because of that suffering.

They established these eight days of Chanukah to give thanks and praise to Your great Name(Siddur).

Jewish history is replete with miracles that transcend the miracle of the Menorah. Why is the latter so prominently celebrated while the others are relegated to relative obscurity?

Perhaps the reason is that most other miracles were Divinely initiated; i.e. God intervened to suspend the laws of nature in order to save His people from calamity.

The miracle of the Menorah was something different. Having defeated the Seleucid Greek invaders, the triumphant Jews entered the Sanctuary. There they found that they could light the Menorah for only one day, due to a lack of undefiled oil. Further, they had no chance of replenishing the supply for eight days. They did light the Menorah anyway, reasoning that it was best to do what was within their ability to do and to postpone worrying about the next day until such worry was appropriate. This decision elicited a Divine response and the Menorah stayed lit for that day and for seven more.

This miracle was thus initiated by the Jews themselves, and the incident was set down as a teaching for all future generations: concentrate your efforts on what you can do, and do it! Leave the rest to God.

While even our best and most sincere efforts do not necessarily bring about miracles, the teaching is nevertheless valid. Even the likelihood of failure in the future should not discourage us from any constructive action that we can take now.

Today I shall...

focus my attention on what it is that I can do now, and do it to the best of my ability.

With stories and insights,
Rabbi Twerski's new book Twerski on Machzor makes Rosh Hashanah prayers more meaningful. Click here to order...